Therapy for Minimally Verbal Autistic Adults

We are inviting autistic adults who have limited verbal communication to participate in a research study that includes 12 weeks of therapy. This would be helpful for people who are struggling with “feeling down”, which can be seen as low or sad mood, change in motivation to participate in activities, and change in sleep. 1-2 people who support the adult would join in the therapy to provide support and learn, as well.

What are the goals of the study?

This study is adapting a mental health treatment for people with intellectual disability to meet the needs of minimally verbal autistic adults.

What will happen during the visit or online?

The participant will complete 12 therapy sessions and assessment visits to check in how they are doing along the way. The 1-2 people who come with them to support and learn will also participate

How will this help families?

This study is about a mental health treatment for minimally verbal autistic adults.

The purpose of this study is to investigate the neural mechanisms associated with visual and social perception in adults with and without autism. Participants complete a 2-hour MRI scan during which they watch a full episode of the BBC show “Sherlock”, a memory recall task which requires them to summarize the episode in their own words, a brief IQ assessment, and five questionnaires. Participants are compensated with a $120 VISA gift card.

What are the goals of the study?

The long-term goal of this research is to understand the neural basis of social interaction perception in controlled and naturalistic contexts, and differences associated with underlying neural mechanisms of autism.

What will happen during the visit or online?

Research appointments at our Center in Baltimore, Maryland are scheduled Monday-Friday. Appointments are approximately four hours. Participants complete a 2-hour MRI scan during which they watch a full episode of the BBC show “Sherlock”, a memory recall task which requires them to summarize the episode in their own words, a brief IQ assessment, and five questionnaires.

How will this help families?

This research will enable clinicians to better understand the neural underpinnings of autism-related symptoms and inform therapies, such as social skills trainings, to more effectively target differences.

Researchers at Rutgers University are conducting a research study to evaluate a 10-session telehealth-based group therapy program.

What are the goals of the study?

The purpose of this study is to evaluate the feasibility, acceptability and effectiveness of an adapted telehealth Group Behavioral Activation Therapy (GBAT+) for autistic adults. GBAT+ is intended to help adults manage stress, anxiety, low moods, and anger.

What will happen during the visit or online?

Eligible people will be asked to complete questionnaires, 5 individual assessment visits, and 10 group therapy sessions.

How will this help families?

Participants will receive 10 group therapy sessions and be compensated up to $230 for completion of assessments.

The current study is being conducted by Drs. Knutson, Viskupic, and Wiltse from South Dakota State University. This is a collaborative initiative to gain insight into various areas impacting the autism community. Dr. Knutson is a clinician having worked with autistic individuals and families for 15+ years. Drs. Viskupic and Wiltse are political scientists who examine attitudes and behaviors surrounding the COVID-19 pandemic. Key points to the study: Prevalence and impact of head-directed self-injurious behavior – Attitudes surrounding supportive equipment – Impact of COVID-19 on access to treatment and healthcare choices.

What are the goals of the study?

Our goal with this study is to gain critical information impacting families who have a loved one with autism. By gathering this information, we hope to improve individual safety, treatment options, treatment accessibility, and policy change supporting family needs.

What will happen during the visit or online?

Participating means completion of an online survey through QuestionPro. You may skip any questions you do not want to answer. We anticipate it will take about 10 minutes of your time.

How will this help families?

These data will assist us in supporting families and individuals impacted by autism, head-directed self-injury, the development of supportive equipment to better protect individuals and guide treatment, and to understand how the recent worldwide COVID-19 pandemic impacted this population to support policy/planning.

My name is Samri and I am a research participant recruiter from Miami University’s Later Language Development Lab. I am reaching out to you today with the opportunity to contribute to our NIH-supported research on the development of a social communication assessment tool which targets adolescents and young adults at the age of transition. We are currently seeking participants between the ages of 14 and 21 years old with a native proficiency in English and typical hearing. We are asking that participants meet one-on-one with a member of our research team for 1-1.5 hours via Zoom to answer a series of interview questions which probe their knowledge of how to communicate in different contexts. After, the participant will be paid the sum of $30-50 via Zelle for their involvement. This study is being conducted by Dr. Trace Poll from the Speech Pathology and Audiology Department at Miami University alongside Jan Petru from Elmhurst University, who is acting as our clinical consultant for the study.

What are the goals of the study?

Specifically, we are continuing research on our development of a social communication assessment tool tailored to adolescents and young adults preparing for the transition from high school to post-school contexts. This tool that we are developing is called the Transition Pragmatics Interview (or the TPI).

What will happen during the visit or online?

This commitment includes the signing of a consent form, the completion of a brief history form, and a 1-1.5 hour meeting via Zoom to answer interview questions probing their knowledge of how to communicate in different situational contexts.

How will this help families?

The information from this project provides information on the degree to which the TPI is a valid and reliable measure of social communication. Speech-language pathologists, special educators and related professionals currently lack assessment instruments that address the population and contexts targeted by the TPI. The project will indicate how the TPI may improve on clinical judgment, or the findings of instruments less targeted to the needs of adolescents and young adults with disabilities in transition programs. Fundamentally, the results will indicate how the TPI may be refined in order to become a more valid and reliable measure.

Recent recognition of the co-occurrence of autism and gender diversity has led researchers to investigate the unique experiences and mental health of individuals at this intersection. Past research has indicated that autistic, gender diverse individuals experience poorer mental health compared to those who are either a gender minority, autistic, or those who belong to neither of these groups. Given the correlation between parent and child health, and recent reports from parents regarding increased support needs at this intersection, it is important to address the health and unique needs of parents among this population. This cross-sectional, survey-based study aims to investigate parent-reported stress and mental health of parents whose adolescents are autistic and gender diverse, in comparison to those who belong to only one of these minority groups (gender diverse or autistic) or neither group. Additionally, the study will examine how parental perceived social support, as well as parent-reported autism characteristics and quality of life in their children, may be associated with parental stress and mental health in parents of autistic, gender diverse adolescents. The findings from this study will improve understanding of the mental health and stress of parents whose adolescents are autistic and/or gender diverse, along with what factors are associated with their well-being. These findings have the potential to inform future work testing supports addressing the needs of this sub-population.

What are the goals of the study?

The goal is to address gaps in the literature related to parents of autistic, gender diverse adolescents. I hope to learn about parental stress and mental health in groups that have not previously been thoroughly explored (parents of gender diverse adolescents and parents of autistic, gender diverse adolescents). I hope to identify factors associated with mental health and stress among these parents that can inform future research and practices.

What will happen during the visit or online?

Participants will fill out an online eligibility survey (aprox. 5 min long). If eligible, they will receive an email with a link to the online study survey. This is a 30-45 min survey in which participants answer questions related to themself and their adolescent. Upon completion of the survey, they will be emailed a $15 Amazon gift card.

How will this help families?

This project will contribute to our understanding of parent mental health and possible risk/protective factors among parents of adolescents in general and among specific at-risk populations. Understanding parent mental health and stress among families in these understudied subgroups can help drive future research around supports for families of gender diverse autistic youth, with the potential to improve quality of life of both parents and autistic adolescents.

Recent work suggests that mothers of children with disabilities are at increased risk for accelerated cognitive aging. Mothers of children with autism spectrum disorder (ASD), in particular, may be especially susceptible to atypical aging given their elevated rates of key risk factors for dementia relative to mothers of typically developing children or children with other neurodevelopmental disorders. A significant number of mothers of children with ASD (up to 65%) continue to be caregivers for their adult children, resulting in increased stress, depression, loneliness, reduced social support, and poor sleep, all of which are risk factors for dementia-related disease. This NIH-funded study conducted by Dr. Laura Friedman at the University of South Carolina aims to address gaps in the literature on cognitive decline in mothers of children with ASD and associated risk factors.

What are the goals of the study?

Findings from this study will provide insight into atypical cognitive aging among mothers of children with ASD as well as potential risk factors. This will shed light on the need to monitor aging in this group, which may have broader consequences on their children who continue to live at home and depend on their parents as caregivers after high school.

What will happen during the visit or online?

You will complete 1 hour of surveys about various topics related to your life, including your memory and mental health. Then you will complete a 2 hour interview via Zoom with a trained examiner who will ask you questions about your experiences. You will also complete measures of thinking skills and attention.

How will this help families?

This study will contribute to our understanding of the potential link between autism and dementia-related disease, and is an important step in identifying the need for and advocating for family-centered supports through the lifespan.

We are the TRANSCEND Research Team at Massachusetts General Hospital – thank you so much for your interest in our research! Our research is about how different areas in the brain are connected in autism compared to typically developing individuals, and is entirely non-invasive. We are currently recruiting individuals ages 14-32. The study would involve behavioral assessments, and 1-2 sessions in the MEG, a device that reads brainwaves, and is similar to EEG. We will also determine with you whether an MRI is needed. If so, it will be a very short one – about 10-15 minutes. You can read more about our studies on our website: http://transcend.mgh.harvard.edu/ We reimburse for time at the rate of $30/hr for behavioral assessments, and $70/hr for MRI/MEG visits. We also reimburse for travel expenses such as Uber and Lyft costs (up to $80 per visit) and for parking. Note also that our visit times are flexible, and we will do our best to accommodate your schedule.

What are the goals of the study?

Our research group studies brain development and associated medical conditions in healthy adults and adults with developmental disorders such as autism, an autism spectrum disorder, language impairments, attention deficit disorders, or sensory processing disorders, including misophonia. Specifically, we are trying to understand how sensory information (sight, hearing, and touch) is processed in the brain of an individual with autism spectrum or other developmental disorders as compared to a healthy individual.

What will happen during the visit or online?

The study would involve behavioral assessments, and 1-2 sessions in the MEG, a device that reads brainwaves, and is similar to EEG. We will also determine with you whether an MRI is needed. If so, it will be a very short one – about 10-15 minutes. If you self-identify as having misophonia, we will ask you to get a comprehensive audiology exam at the Mass Eye and Ear Audiology clinic affiliated with MGH, to rule out other potential auditory processing disorders.

How will this help families?

There is no direct benefit to the subject for participating in the research. We hope that the information gathered in our studies will aid in the identification, understanding, and treatment of autism.

RAYS, a Brown University research study, is aimed at studying the outcomes and development of autistic teens and young adults aged 12-24 as they navigate adolescence to early adulthood.

What are the goals of the study?

The goal of RAYS is to examine the challenges and problems that adolescents and young adults on the autism spectrum experience over the course of adolescence and young adulthood, especially their exposure to alcohol and other drugs.

What will happen during the visit or online?

Participation involves 4 interviews over 3 years, each one year apart after the initial assessment. The study consists mainly of interviews and filling out questionnaires on mood, behavior, alcohol and other drug use, and relationships with family and friends. Teens/young adults can earn up to $395 for participating over the course of the study and parents/guardians can earn up to $225. All visits can be done remotely or in-person. The length of the visits vary by timepoint. Our baseline assessment generally takes 3-4 hours, T2 takes about one hour, T3 takes about 3 hours and T4 takes about one hour. All assessments can be broken up into multiple sessions if needed or completed in one sitting – we leave it up to the participant. If a participant is over 18 years old, their parent/guardian does not need to participate in order for the young adult to participate. If their parent/guardian would like to join the study at a later point, we will try to accommodate enrolling them. 

How will this help families?

This study can help researchers better understand the experiences of adolescents and young adults on the autism spectrum.

Researchers in the Vanderbilt University Medical Center department of hearing and speech sciences are running a study to better understand why some autistic people are more sensitive to everyday sounds than others and how this relates to the way the brain processes sound.

What are the goals of the study?

Although they are not frequently diagnosed, sound sensitivity disorders, including hyperacusis, misophonia, and phonophobia, are extremely common in the autistic population. The purpose of the current research study is to compare and contrast people with and without these different sound sensitivity syndromes in terms of their clinical symptoms, hearing, brain function, and mental health. By examining a group of adults with ALL levels and types of sound sensitivity (including no sound sensitivity at all), we hope to answer fundamental questions about the nature of sound sensitivity and improve the ways in which clinicians diagnose and assess patients with this common complaint.

What will happen during the visit or online?

Study participants will be asked to complete some online questionnaires and come to Vanderbilt for up to two in-person sessions. The first in-person session includes psychoacoustic (hearing) tests, interviews, and standardized psychological assessments. After that session, you may qualify for a second session that will include more hearing tests, brainwave recordings (EEG), and other measures of auditory function. There are no anticipated risks to you, and you may not benefit directly from your participation in this study, though you will have the opportunity to request a report of your study results. Following a screening questionnaire (approximately 10–15 minutes), there are two visits to the laboratory (each lasting approximately 3-5 hours) and two groups of online questionnaires (approximately 20–40 minutes each).

How will this help families?

Currently, research on autism and sound sensitivity has been limited to primarily descriptive studies of prevalence, and there is very little understanding of underlying mechanisms, let alone any evidence-based diagnostic or treatment strategies. This work will be foundational in advancing our knowledge of this problem and its underlying causes in the autistic population, which can hopefully lead the way toward better clinical care for autistic people who experience sound sensitivity in their everyday lives.

We want to measure brain rhythms in children/teens with and without ASD during overnight sleep at home using wearable sleep headbands.

What are the goals of the study?

We’re hoping to learn more about differences in brain rhythms during sleep. Since lab-based sleep studies are expensive and burdensome, a sleep headband that could accurately and comfortably measure sleep rhythms at home would allow us to study more people over longer periods of time and help us learn more about sleep disruptions in different populations.

What will happen during the visit or online?

We will send a sleep headband to participants and conduct a remote training session to teach participants how to set it up and use it. Participants will then sleep at home with the headband for up to 3 consecutive nights. We will have daily checkins and offer remote technical assistance as needed. Participants will answer some questionnaires and surveys, and return the headband in a pre-paid box at the end of the study.

How will this help families?

Learning more about sleep differences may help us develop treatments for sleep difficulties in the future.

We are a group of researchers at the Centre for Addiction and Mental Health (CAMH) and University of Toronto, Toronto, Canada, doing a study, titled Knowledge, Perceptions, and Use of Psychedelics among intellectually able adults with autism spectrum condition: An online survey. We are doing this project to learn about the perception, opinions, and knowledge of autistic adults about psychedelics, and whether they have used them in the past. Psychedelic compounds are a group of chemicals that change or enhance sensory perceptions, thought processes, and energy levels.

What are the goals of the study?

These compounds are sometimes used to facilitate spiritual experiences. Psychedelic compounds have shown impressive effects in neurotypical people with depression, post-traumatic stress disorder, substance misuse, and obsessive compulsive disorder, etc. Many clinical trials of psychedelics have been published in neurotypical populations and many more are ongoing. Nonetheless, there has been only one clinical trial of 3,4-Methylenedioxymethamphetamine (MDMA), one of psychedelics) in autistic adults with co-occurring social anxiety disorder. This neglect represents mental health and research inequity. Therefore, we want to do this study to listen to voices from autistic people to guide research and practice priorities surrounding the possible future uses of psychedelics.

What will happen during the visit or online?

They will be asked for responses to the online survey regarding their opinions and past experiences with psychedelics. The survey should take between 20 to 30 minutes to complete. Any information we collect from people is private and deciding to complete the survey is voluntary. Completing the survey (or not) will not impact the care anyone receives at their medical service providers (including CAMH) now or in the future.

How will this help families?

In order to better respond to the diverse needs of autistic people and to develop new interventions for their various co-occurring mental health concerns, it is crucial to represent the ASC population in empirical research on psychedelics (Oritz et al., 2022). Obtaining the opportunity to evaluate the efficacy of this new treatment method in individuals with ASC would depend on the perspectives of the ASC population on psychedelics, as well as their willingness to try them as a potential treatment. It is important to find out what kind of research and mental health improvements are of value to autistic individuals. It is equally important to obtain their perspective prior to carrying out such studies. Moreover, it is vital to transform the experiences of autistic adults into knowledge that can be used to redefine current research strategies (Pukki et al., 2022). Valuing the voices of autistic individuals and involving their opinions can have highly beneficial consequences such as the correction of existing stigmas and misconceptions of concepts about autism and neurodiversity, and can lead clinical research towards more effective directions (Pukki et al., 2022).